Freedom and Fraternity (Houses)

When is an autistic person ready for adulthood? When is he or she ready for, and mature enough to handle, the decisions and responsibilities that accompany autonomous adult life?

The question isn’t clear-cut with neurotypical youth, either.  Attitudes vary, and laws can be inconsistent (in most of the U.S., young people can be criminally prosecuted as adults at 14 and drive cars at 16, but can’t drink alcohol until 21).  But for most of the important matters, throughout the U.S., one becomes an adult at age 18.  That’s when people can vote, sign contracts, control their own finances, make their own medical decisions, and generally govern their lives as they choose without the need for parental permission.  Not coincidentally, it’s around this age that most people graduate high school, and many move out of their parents’ homes for higher education, jobs, romantic partners, or families of their own.  Despite ambiguities, despite legal inconsistencies, and despite a rather disturbing trend among the middle and upper classes of retaining a childlike social status well into the mid-twenties, nevertheless, for most people, in most important ways, 18 remains the magic age.  And barring premature death, nearly all neurotypical young people are guaranteed the assurance of receiving the status, rights, privileges, and responsibilities of adulthood sooner or later.

When discussing autistic youth, however, particularly concerning the much-ballyhooed issue of post-high-school “transition,” the age-of-adulthood question starts to be framed as a “if” instead of a “when.” Milestones such as dating, independent travel, medical autonomy, living alone, marriage, and parenthood are referred to as hypotheticals, if not as unattainable ideals. Parents openly reprimand themselves for “dreaming” that their children will ever become “independent.” Transition programs, therefore, tend to center, not on the transition from childhood to adulthood, but from minor-childhood to adult-childhood. Extended high school, care centers, guardianship, therapy, always therapy—autistic people, apparently, never outgrow the need for therapeutic training. The fact that many autistic young adults choose to drop out of therapy after high school is considered a “service gap” rather than, perhaps, evidence that behavioral therapy is an undesirable experience which people tend to avoid once they’re old enough to have a choice in the matter (this data was collected from a survey of “parents and guardians” of autistic adults, which says quite a lot in itself). Autism is a lifelong condition, so the “treatments” for it are expected also to be lifelong, until the ultimate (and unattainable) goal of “cured” or “indistinguishable from peers” is achieved. The autistic person’s desires and goals, of course, are irrelevant. By virtue of remaining autistic, he or she is presumed to remain childlike and therefore incompetent to determine his or her best interests.

Independence is itself a confusing concept, because the word, in this context, refers to two different things:
Financial independence—having earned income high enough to be financially self-supporting without assistance from family or the state
Legal/Social independence—having the right to make one’s own decisions about one’s own life.

People who lack financial independence include:

Unemployed people

Low-wage or part-time workers whose wages are not sufficient to meet their basic living expenses

People in bankruptcy

Homemakers and stay-at-home parents

Most students

Retirees living on retirement benefits

Physically disabled people living on disability benefits

Heirs and heiresses living on family income

People receiving state assistance (“welfare”) for low-income individuals (such as food stamps or subsidized housing)

This is not an exhaustive list, and the exact boundaries of it may be debated—for instance, some people would argue that retirees living on Social Security retirement benefits are, in fact, financially independent because they paid into the system as workers; other people might argue that people who live off capital investments are not really “earning” their money through their own effort—but such debates aside, let us leave it at the simple statement: there are many adults who, through one circumstance or another, are living at least partially on income other than their own individual earnings. I’m affixing no moral judgment to this status (Note that I happen to be in one of these categories: homemaker/stay-at-home parent), merely noting its existence.

Okay? Okay.

There are also people who lack legal/social independence—that is, who lack the freedom (either on paper or in practice) to make basic decisions about their lives such as where they go, with whom they associate, whether and with whom they have romantic relationships, what they eat and drink, what medications they take, and what medical procedures they undergo. In the U.S., these people include:

Children under age 18

People serving criminal sentences in jail or prison

Disabled adults under guardianship

Disabled adults living in institutions, group homes, or nursing homes

People in psychiatric hospitals or wards

Psychiatrically-labeled people living under community treatment orders (“outpatient commitment”)

Adults in abusive relationships*
*Note: a situation in which someone—say, a spouse, partner, family member, or representative payee—uses financial control in order to coerce compliance over a financial dependent concerning a non-financial matter is, by definition , an abusive relationship.

Clearly, financial independence and legal/social independence are not synonymous. In fact, for neurotypical or presumed-neurotypical people, they’re largely unrelated. It would be ludicrous to declare that because a 70 year old man is living on retirement benefits, he should be forbidden from dating. No one would claim that because a college student lives on student loans and family support, her diet should be monitored. If a wife of a stay-at-home dad declared that because she was the family breadwinner, she could force her husband to take certain medication, the relationship would rightly be decried as abusive.

In neurodivergent adults (and those presumed to be neurodivergent whether they are or not, such as seriously physically disabled people or elderly people), however, lack of full financial independence is routinely cited as proof of cognitive incompetence and thus justification for infringement of legal/social independence. Parents continue to retain control over the lives of their grown autistic offspring (either by official court order, through the institution of guardianship, or through unofficial controls that would be considered abusive if the grown children were neurotypical) and hold out full-time employment as one of several assorted and largely arbitrary “milestones” their children must meet before they can be considered “ready” for the same freedoms neurotypical youth take for granted upon their 18th birthdays.

But aren’t there some adults who genuinely need to be under guardianship?

Perhaps.

How can I tell whether my teenage Child With Autism should become his own guardian when he turns 18? How will I know whether he’s ready?

Good question.

Is there a residential college near you?

Go to a frathouse. Check it out.

If you go to a frathouse, you will see lots of (mostly neurotypical) young adults engaging in blatantly irresponsible behavior. Excess drinking, reckless sex, spending too much money, possibly some illegal drug use. Yet legally, the young people doing these things are indisputably adults with the freedom to be as irresponsible as they want to be.

Because for neurotypicals, adulthood is a right that comes automatically, not a privilege that has to be earned. We like to pretend otherwise, when we lecture our children about Adult Responsibility, that growing up doesn’t mean getting to do whatever one wants. That adulthood means responsibility as well as freedom. But it doesn’t, really. There are plenty of irresponsible adults, and they still have the legal right to blow their money on beer and lottery tickets. It’s only for disabled youth that adult freedoms are contingent upon whether the individuals are considered “safe” or “mature enough to handle them.”

I can’t let my 18-year-old Child With Autism make his own medical decisions, he’d go off his Risperdal!

Well, there are plenty of neurotypical 18 year olds making medical decisions that may be unwise. So what? They have the legal freedom to do so.

I can’t let my 22-year-old Child With Autism control his own money; he’d just spend it all!

So what? There are neurotypical 22 year olds spending all their money irresponsibly, too. They have the legal freedom to do so.

I can’t let my 23-year-old Daughter With Autism date; someone might take sexual advantage of her!

Many neurotypical young adults enter into unwise romantic or sexual relationships, some of which they later regret. So what? They have the legal freedom to do so.

It’s a double standard, and a particularly egregious one at that—not only are neurotypical youth not held to standards of self-sufficient employment and arbitrary “maturity” before automatically becoming their own guardians upon maturity, but these standards are far more likely to be unattainable for autistic youth, because of unequal access to employment and education (to say nothing of the emotional effects of years of learned helplessness). So before you decide that your child needs guardianship, institutionalization, group home residency, supervision, or court-ordered medication, go check out a frathouse. Remember that all the people there are legally classified as free and autonomous adults. Is your child’s fondness for Pokemon really so immature, by comparison?

Homesteading

Inspired by this useful and thoughtful post.

I have no problem whatsoever with the choice to grow or raise one’s own food. I think it’s a valid, even admirable choice, and I firmly oppose laws or ordinances that unduly infringe on this practice. I’m not willing to allow you to keep a goat in your apartment, but vegetable gardens and outdoor fenced animals should be a non-controversy.

My problem with “homesteading” is when it becomes framed not as a personal choice, but as a moral imperative. The history and origins of the word “homestead” are not coincidental to this. Part of my problem with “homesteading” as a moral imperative is that it overlaps with the idea of health as a moral imperative, which I’m strongly opposed to. Eating organic, homegrown vegetables is probably healthier than drinking a slurry of transfats and processed sugar, but it’s not more MORAL. Health and morality are two distinct attributes that really have nothing to do with each other.

My other problem is that “homesteading” has become affiliated with elements that are second only to Christian Reconstructionism in their creepy blend of authoritarianism and libertarianism, fused by a generous helping of paranoia. Ban aspartame, ban transfats, ban giant sodas, but don’t dare regulate assault rifles, because we might need them to overthrow the government. And we certainly don’t need affordable healthcare, because vegetables, herbs, and positive thinking are all we need to stay healthy, and Big pHARMa produces nothing but poisons anyway!

Most people who do the grow-your-own-food thing aren’t paranoid racists, and the connection to the historical use of “homesteading” is simply incidental. Likewise, most parents who homeschool aren’t child-beating Dominionists out to raise up an army of Christian soldiers, and most mothers who birth at home aren’t fatalistic naturalists who believe that death by postpartum hemorrhage is God’s/Nature’s Will. The problem isn’t with the majority. The problem is that these people are let into the party at all, and the sane, non-paranoid “homesteaders” just shrug and say “take what works for you.” Y’all, flower gardeners and crocheters don’t have to deal with a loud and obnoxious fascistic subculture at every meeting. It is, in fact, possible to keep this element out of your hobby. I shouldn’t have to comb through crap about forced microchipping, Zionists, and the North American Union to find information about canning and nutrition. I’ll allow a little leeway on guns as a legitimate political difference, but if your “homesteading” website includes any references to “Autism” or “Jews” in absolutely any context whatsoever other than “how to prepare sensory-friendly food” or “how to prepare Kosher food,” I will dismiss the entire thing out of hand.

Autistic People Are

Autistic people are people.

Humans. Human beings. Persons. Individuals. Members of the species homo sapiens. Mankind.

If all Xs are Ys, anything that is true of all Ys must be true of all Xs.

If all autistic people are people, then any true statement about “people,” “humans,” “mankind” must be true of autistic people. If it is not, the statement ceases to be a true statement.

True statements concerning the category “people” which includes the subcategory “autistic people”: People think and feel and know. People are conscious. People are sentient. People have bodies. People have minds. People have souls. People desire. People make choices. People feel pleasure and pain and confusion and excitement and wonder and ecstasy. People make mistakes. People disagree with other people. People have subjective perspectives. People have experiences. The soul uses the mind to use the body to interpret a miniscule fragment of the world.

Autistic people are autistic.

“Autistic” refers to a specific subcategory of the category “people.” The boundaries of this subcategory can be somewhat ambiguous, but the defining features lie in the structures of the brain. Autistic people are born autistic. Autistic people remain autistic throughout their lives. Autistic people remain autistic regardless of what life experiences or accomplishments they encounter or achieve.

Autistic infants are autistic. Autistic children are autistic. Autistic teens are autistic. Autistic seniors are autistic. Autistic men are autistic. Autistic women are autistic. Autistic transgendered, genderqueer, or intersexed people are autistic. Autistic people who can’t read are autistic. Autistic people with graduate degrees are autistic. Autistic people in prison are autistic. Autistic people working at diners are autistic. Autistic bankers are autistic. Autistic computer programmers are autistic. Unemployed autistic people are autistic. Married autistic people are autistic. Single autistic people are autistic. Honest autistic people are autistic. Dishonest autistic people are autistic. Homeless autistic people are autistic. Autistic volunteers at homeless shelters are autistic. Autistic people with other disabilities are autistic. Autistic people without other disabilities are autistic. Diagnosed autistic people are autistic. Undiagnosed autistic people are autistic. Autistic people who are proud of being autistic are autistic. Autistic people who don’t know that they’re autistic, don’t see themselves as autistic, or vehemently deny being autistic are autistic.

Autistic people are people. Autistic people are autistic. Autistic people are.

My Brain Is Not An Assault Rifle

I didn’t want to write this post. I didn’t want to write about the Sandy Hook massacre of 27 people, 20 of them children. I don’t typically write about strong emotions, and what is the aftermath of the death of children but strong emotion? I didn’t want to. But here I am.

When I heard of the shooting at Sandy Hook Elementary School in Connecticut, I was horrified and viscerally sickened. I imagine that most people felt similarly, especially those of us who are parents. I thought about my friends and acquaintances in Connecticut and worried for their safety. I thought about my children–my nine-year-old son, who at that moment was in an elementary school classroom exactly like that of the Sandy Hook children. My seven-year-old son and my not-quite-six-year old daughter, so close in age to the young victims. My firstborn daughter, who follows current events and could not be shielded from the truth. The baby who doesn’t yet know she’s been born into a world in which people murder children. I thought about how bodies so small could be broken, how lives so recently begun could be ended. I was not surprised, however. Not by this. The knowledge that there exist people who would kill children is not surprising.

Double consciousness is an ugly, insidious thing, tainting even pure emotions. I cursed myself for letting my thoughts wander to how the murders would affect neurodivergent people, but wander they did. Spree killings are rare, but abuse of disabled people is common. From the moment I learned the killer was a young man, I suspected he would be labeled autistic. Maybe bipolar or schizophrenic, perhaps. It didn’t really matter. Popular opinion doesn’t differentiate diagnoses all that much. Soon there would be calls for more psychiatric hospitals, diminished patients’ rights, monitoring for people with psychiatric labels, streamlined ability to file for guardianship and place adults into involuntary commitment. Patient consent and autonomy would be dismissed as mere bureaucracy and underfunding, senseless impediments to getting people the help they need. Warnings and “profiles” would be issued of the “potentially violent,” which would be broad enough to encompass most social and neurological deviants. Every eccentric loner, with or without a psychiatric label, would be viewed with some suspicion, and people with highly-stigmatized psychiatric labels would be left at the mercy of overzealous police and hospital personnel desperate to prevent another massacre. I was thinking about all of this on the day of the shooting, before having really been reconciled to the event’s having happened. Some would say I was selfish. But double consciousness is an ugly thing.

Made all the uglier, of course, by the fact that, at the time I write this, it would seem that I was more right than I anticipated.

Before there was any confirmation of what, if any, mental diagnoses the killer may have had, people were using the tragedy as a rallying cry for a “national conversation about mental illness.” As with previous mass shootings, “mental illness” is the triangulation point, the middle ground, between pro-gun-control and anti-gun-control positions. Pro-control advocates point out that while murder can be committed with any kind of weapon, mass murder almost always involves a firearm or an explosive, which provide the most efficient methods of killing many people in a short time with minimal opportunity for the victims to fight back. Anti-control advocates argue that regulations will have little effect on criminals, but will prevent law-abiding individuals from defending themselves. But gun control is political, you see. And emotional. And we wouldn’t want to alienate our friends with emotional, politically partisan sentiments like “maybe nobody really needs a semiautomatic assault rifle for legitimate purposes.” So attention is diverted to the nonpolitical, unifying common cause, like the horrible scourge on the country that is The Mentally Ill, and in this case, specifically, Children Suffering From Autism.

There’s one small problem: There’s no link between autism and violence. In fact, although spree killers usually but not always have certain specific psychiatric disabilities (usually those involving psychosis or explosive rage–which represent a small minority of the total psychiatrically-labeled population), violent crime in general is overwhelmingly committed by neurotypicals. 96% of the time, in fact. Yes. 4% of violent crime is committed by people who have some kind of mental illness, disorder, or disability, and the other 96% is committed by people who are completely neurotypical.

There are a few common responses to this fact:
Someone who would do that obviously isn’t really neurotypical.
This is circular logic. “Neurotypical” doesn’t mean “nonviolent.”
Doesn’t the act of shooting, killing, or otherwise hurting another person prove that there is something wrong with a person’s mind?
Arguably, yes. But “something wrong” doesn’t mean “having a condition classified as a mental disorder.” The central claim of the neurodiversity movement is that conditions classified as disorders aren’t necessarily “something wrong,” and the converse also applies: an undesirable condition is not necessarily a neurodivergent one. Psychiatric diagnoses contrast deviant from normal, not undesirable from desirable. “Neurotypical” does not mean neuro-ideal, neuro-optimal, neuro-desirable, or neuro-perfect. It means typical. Normal. Average. Common. Standard. Predictable. Expected. No more than a quick glance through a basic history textbook, or any major newspaper, is needed to demonstrate that in human beings, violence against other humans is (under the right conditions, at least) typical, normal, average, common, standard, predictable, and expected.
Violent crime is an irrational act, therefore anyone who commits it is not in a rational state of mind.
Violence can be rational, but it doesn’t matter, because “neurotypical” doesn’t mean “rational” any more than it means “ideal.” Neurotypical humans are not purely rational creatures. They have irrational desires and emotions. Sometimes they express those emotions through violence.
Some autistics claim that we are actually more rational than neurotypicals, because we’re not burdened by social concerns, but I don’t think this is true, either. Becoming deeply upset when a bookshelf is disorganized isn’t exactly rational. Humans in general, whether neurotypical or otherwise, aren’t wired or evolved to be purely rational beings.

Violence and neurodiversity are almost entirely unrelated.

But somewhere along the way, the discussion of What To Do About The Mentally Ill gets linked to the debate about gun control. The NRA calls for a national database of the mentally ill while adamantly defending its right to wield deadly weapons, while gun control advocates explicitly contrast psychiatric treatment with firearm availability. But the two issues are not related, nor parallel. A gun is an inanimate object. It has no rights, no entitlement to respect, no feelings that can be hurt. Gun owners are people, and some of them are, perhaps legitimately, upset that their hobby is being associated with mass murder. But despite the NRA’s attempt to make it so, “gun owner” is not an identity. It is a state of ownership of an inanimate object.

My Autistic brain is not an inanimate object. It is very much alive, moving and firing, changing and growing. It is the physical manifestation of my consciousness. It is my most distinctive feature. It translates my senses into thought, my thought into memory, and my memory into action. It enables me to form these words I’m writing, and direct my fingers to type them out. Without it, I would die.

My brain is mine. It is not yours, not the government’s, not society’s, not the Church’s, not my family’s or my parents’. Manifestations of my consciousness may affect others, but they do not belong to anyone but me. My thoughts, feelings, desires, perceptions, experiences, and expressions are mine and mine alone.

A key argument for the use of identity-first language (“autistic person“) over person-first (“person with autism“) is that the latter frames the condition as something separate from the self, something which can, perhaps, be changed or removed without harm to the self. Person with autism, person with mental illness, person with an assault rifle. My mind becomes decoupled from myself, detached, dissociated, abstracted, regulated. For the public good. For my family’s good. For my own good.

My brain is not an assault rifle. It is not part of a well-regulated militia. I don’t need a permit or a background check to operate it. My thoughts are not a public safety issue. Because I am a mortal human and not a magical or telepathic fictional character, my brain cannot kill anyone. My consciousness poses no threat to anyone. And unlike a gun, my brain can never misfire.

Guns may be used to kill animals. They may be used to kill people. How we classify their use in this manner depends on the identity of the person killed–an attacker, an invading militant, a murder victim, an innocent bystander? The gun is simply a tool. Tools magnify the potential range of action of the human body. As wheels magnify the traveling power of those who use them, guns magnify, greatly so, the killing power of those who use them. This is self-evident. As objects, they can be controlled. There is no parallel between “gun control” and “mental illness control.” Kindly leave us out of your “national conversation.”

Why Parents of Children with “Medical Autism” Should Support Neurodiversity and the Anti-Cure Movement

Autism acceptance has been slowly gaining a bit of ground in the popular discourse (although one wouldn’t know it from the Congressional autism hearings, nor the coverage of the DSM revisions). We’ve gone from a movement that can be dismissed out of hand to one whose arguments have to, at least at some level, be engaged. Still, we’re at an enormous rhetorical disadvantage by not being allowed to define our own language, and some of the language floating about seems as if it were crafted to thwart us. One such rhetorical stumbling block, which has lately been dividing the autistic self-advocacy community from parents of autistic children, natural health advocates, and even fellow psychiatric survivors, is “medical autism.”

“Medical autism,” for those who believe in it, is a condition (usually induced by some external factor, like an adverse vaccine reaction) which causes a variety of symptoms, including seizures, allergies, chemical sensitivities, dyspraxia, indigestion, constipation, diarrhea, chronic pain, and chronic fatigue. The existence of this condition is a common point of conversational derail between anti-cure autistic people and pro-cure parents of autistic children. David Kirby attempted to link the condition to “severe” or “low-functioning” autism, which I argued against once before, but even separated from the high/low-functioning dichotomy, the concept remains contentious. Pro-cure parents often accuse autistic self-advocates of stifling their attempts to relieve their children’s illnesses, or suggest that if we were afflicted with the same kind of “medical autism” that their children are, we would wish to be cured, too. There are a couple of flaws in this assertion:
First, many anti-cure autistic self-advocates do, in fact, experience (and suffer from) seizures, migraines, chronic pain, allergies, and autoimmune illnesses–we just don’t tend to classify those things as “autism.” I would venture that to a person, when autistic self-advocates speak of accepting, and not wishing to be cured of, “autism,” we are not including physical illnesses in the to-be-accepted-and-not-cured category. We are using the term “autism” as most clinicians do, in reference to certain cognitive, behavioral, and personality-related characteristics (which, for the purpose of this post, I will refer to as “cognitive/behavioral/neurodevelopmental autism”): repetitive behavior, perseveration, hyperfocus, linear thought, asynchronous development, detail-specific focus, intense feeling, and an uneven pattern of ability. It’s a condition with several well-documented disadvantages, but several advantages as well, and many of us are quite attached to it.
Second, it’s unclear why the concept of “medical autism” is necessary, as non-autism-specific terminology already exists for these physical conditions. Illnesses and adverse reactions to foods and other substances are called allergies or sensitivities. Tendency to seizures is called epilepsy or seizure disorder. Chronic “gut issues” are called IBS or indigestion or colitis or reflux. As not all autistic people have these conditions, and not all people with these conditions are cognitively/behaviorally/neurodevlopmentally autistic, I’m not sure what benefit there is to grouping all of these conditions in with cognitive autism under the “medical autism” umbrella, rather than simply saying “she is autistic and epileptic” or “he has autism and IBS.”

Nevertheless, “medical autism” has gained a certain degree of currency among parents of autistic children, and it can make autism discussion very slippery. Many parents accept their children’s cognitive autism, even becoming offended if it’s suggested otherwise, but support autism-pathologizing organizations and campaigns out of concern for their children’s “medical autism.” Because autistic self-advocates rarely use the term “autism” to describe physical illnesses, we may be perplexed when parents say things like “Of course I don’t want to change my child’s personality! I just want to cure his autism so he won’t have seizures and diarrhea anymore.” But let’s assume that such a parent is telling the truth about her own goals. Even so, supporting policies, organizations, and campaigns which pathologize cognitive/behavioral/neurodevelopmental autism should be recognized as harmful and counterproductive to the goal of awareness (or treatments or cures) for “medical autism.”

Is “medical autism” even on the agenda of autism-pathologizing organizations?

Autism Speaks, the largest autism-pathologizing organization, mentions “autoimmune” or “autoimmunity” 62 times on its website. Over two-thirds of these references are concern autoimmune issues as a potential cause (or “risk factor”) for (cognitive/behavioral/neurodevelopmental) autism, not as conditions meriting treatment in their own right, and certainly not as conditions meriting treatment instead of treatment for cognitive/behavioral/neurodevelopmental autism. “Seizures” gets 129 mentions, the majority of which concern the recognition of seizures in cognitively/behaviorally/neurodevelopmentally autistic children, or the use of seizure medication for the purpose of reducing the traits of cognitive/behavioral/neurodevelopmental autism. “Allergy” gets 75 mentions. “Migraine” gets a scant 6 mentions, all of which merely list migraines as one of several “associated medical conditions” of (cognitive/behavioral/neurodevelopmental) autism. “Gastrointestinal” gets 159 mentions, most of them in the context of GI conditions as contributing factors to autistic behaviors.

By contrast, the AS website mentions “behavior” and “behavioral” a full 4937 times. “Development” and “developmental” get 3776 mentions. “Neurological” gets 455. “Cognitive” gets 740. “Repetitive” gets 281. “Emotional” gets 748. “Speech” gets 3196. “Social” gets 5637. “Deficit” gets 464. “Communication” gets 2416. “Obsession” and “obsessive” get 81. “Wander” gets 68.

This would indicate that Autism Speaks is very concerned with pathologizing and treating (and ultimately preventing and curing) the way autistic people think and behave, and only concerned with physical illnesses suffered by autistic people insofar as it pertains to this goal. Therefore, a parent who is sincere in her assertion that she does not wish to change her autistic child’s personality, only to alleviate his chronic illnesses, should not find Autism Speaks representative of her beliefs.

The Autism Society of America is less overtly pathologizing than the other autism organizations, but is still mainstream, well-respected, and broadly within the medical model. ASA mentions “autoimmune” or “autoimmunity” 15 times. “Seizure” is mentioned 31 times. “Migraine” is mentioned once. “Allergy” gets 31 mentions. “Gastrointestinal” gets 28.

And “Behavior” gets 297 ASA mentions. “Cognitive” gets 67. “Development” and “developmental” get 379. “Neurological” gets 56. “Sensory” gets 175. “Social” gets 333. “Deficit” gets 80. “Repetitive” gets 51. “Obsess” and “Obsessive” get 19. “Speech” gets 124. “Communication” gets 237. “Emotional” gets 72. “Wander” gets 18 mentions. So the ASA, too, is more concerned with autistic personality and behavior than with chronic illnesses.

But Autism Speaks and the Autism Society of America have actually been criticized by other pro-cure parents and organizations for their lack of attention to biomedical issues, so let’s look at how more pro-biomed autism-pathologizing groups compare. The National Autism Association is an autism-pathologizing organization which competes with Autism Speaks by offering a more biomedical-centered approach (and by depicting autism as even more of a tragedy than Autism Speaks does). NAA has a smaller website than AS does, so search results will not be comparable, but can still illustrate focus. “Autoimmune” and “Autoimmunity” are mentioned 6 times by NAA. “Seizure” is mentioned twice. “Gastrointestinal” is mentioned 3 times. “Migraine” gets no mentions.

“Behavior” gets 22 mentions. “Emotional” gets 5. “Cognitive” gets 2. “Sensory” gets 7. “Speech” gets 9. “Communication” gets 10. “Repetitive” and “obsess” get 1 each. “Wander” gets 37. “Development” gets 21. “Social” gets 10.

So although NAA is a much smaller website than AS, and is more biomedically focused, they still devote considerably more focus to pathologizing cognitive/behavioral/neurodevelopmental autism than to addressing co-existing chronic illnesses.

Moving on to Generation Rescue, another biomedical-centered organization. Their site mentions “autoimmune” and “autoimmunity” 13 times. “Seizure” gets 11 mentions. “Gastrointestinal” gets 25. “Migraine” gets 2. “Allergy” gets 22. Significantly, not all of these mentions pertain to autism specifically, unlike those of AS and NAA.

However, Generation Rescue gives “behavior” 73 mentions. “Cognitive” gets 17. “Emotional” gets 22. “Development” gets 73. “Neurological” gets 14. “Sensory” gets 32. “Speech” gets 31. “Social” gets 48. “Repetitive” gets 10. “Obsess” gets 10. “Communication” gets 21. “Wander” gets 5. “Deficit” gets 12.

Finally, let’s look at Age of Autism, a larger organization with a large website which more seriously competes with Autism Speaks with a biomedical focus. AoA gives “autoimmune” and “autoimmunity” a startling 496 mentions. “Seizure” gets 497. “Migraine” gets 37. “Gastrointestinal” gets 376. “Allergy” gets 189 (excluding the advertisements). Like GR, and unlike AS and NAA, AoA discusses autoimmune, epileptic, allergic, and gastrointestinal disorders as medical conditions in their own right, not merely as contributing factors to cognitive/behavioral/neurodevelopmental autism.

But AoA also gives “behavior” 494 mentions. “Cognitive” gets 336 mentions. “Emotional” gets 494. “Sensory” gets 413. “Development” and “developmental” get 503. “Repetitive” gets 167. “Obsess” and “obsessive” get 146. “Speech” gets 509. “Social” gets 519. “Deficit” gets 192. “Communication” gets 505. “Wandering” gets 88.

I don’t claim that my method is scientific or exact, but I do believe these numbers show that, despite many pro-cure parents’ claim that they don’t want to change their autistic children’s personalities, only to cure the chronic illnesses they insist on referring to as “medical autism,” the autism-pathologizing organizations they support devote significantly more ink to pathologizing autistic cognition, behavior, and personality than they do to chronic illnesses.

This presumes, of course, that parents who say that they have no interest in treating or curing their children’s cognitive/behavioral/neurodevelopmental autistic traits are being completely honest about their desires, but there is another possibility: some parents may be completely truthful in stating that their primary concern is their children’s chronic illnesses, but they may also hope that when their children’s medical conditions are successfully treated, their autistic behaviors and personality traits will lessen as well. This is clearly a mindset encouraged by all of the autism-pathologizing organizations. However, this, too, is flawed. Pathologizing cognitive/behavioral/neurodevelopmental autism actually worsens the medical treatment that autistic people receive. Autistic adults receive worse health care–medical, not psychiatric, healthcare, mind—than non-autistic adults. The pathologizing deficit model worsens this. Autistic people are even denied lifesaving organ transplants, based largely on the false beliefs that autistic people are mentally incompetent and have poor quality of life—falsehoods promoted and perpetuated by autism-pathologizing organizations. Disabled people in general receive worse health care than do typically-able people; developmentally disabled people in particular. The same is true of people with psychiatric labels.

When people have their personalities, cognition, and behavior pathologized (as all autism-pathologizing organizations advocate doing to cognitively/behaviorally/neurodevelopmentally autistic people), the pathologized people will be perceived as less competent, less credible, and less valuable. This manifests itself in healthcare just as it does in education, employment, and other fields. Anecdotal evidence of autistic and other neurodivergent people having their physical illnesses dismissed is rampant. How many of us have reported medical symptoms to doctors only to be told that we must be depressed or anxious? Or had injuries dismissed due to unusual pain response? Belief that the mind is defective results in less attentiveness to the needs of the body, not more.

If your autistic child has a chronic illness that you call “medical autism,” don’t be fooled into thinking that organizations that seek to cure “autism” take any interest at all in your child’s illness, or that pathologizing your child’s personality will increase the quality of physical health care he receives. Instead of an autism-pathologizing organization, to support research and treatments into chronic illnesses that disproportionately affect autistic people, please support organizations such as these:
Epilepsy Foundation
American Autoimmune Related Diseases Association
International Foundation for Functional Gastrointestinal Disorders
Digestive Health Alliance
About IBS
Food Allergy Initiative
Asthma and Allergy Foundation of America
Food Allergy and Anaphylaxis Network
Migraine Research Foundation
Alliance for Headache Disorders Advocacy
CFIDS Association of America
Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy
National Fibromyalgia Association
National Fibromyalgia Research Association
Crohn’s and Colitis Foundation of America
American Celiac Disease Alliance
PANDAS Network
Arthritis Foundation
National Multiple Sclerosis Society
Lupus Foundation of America
Multiple Chemical Sensitivity Referral and Resources

Dear Internet Smartasses:

We get it. The people you disagree with are stupid and deserve to be insulted. And what worse insult can you think of than calling them “retarded” or “mentally ill” or “bipolar” or “schizophrenic” or “autistic”? Or perhaps just suggesting that they must be “off their meds,” need to “take their meds,” “need therapy,” “need help,” or in some way belong in an institution?

Yeah. Please stop doing that. Psychiatric abuse is a real thing. Real people—people who have committed no crime, are not violent, and are a danger to no one—are locked away, hospitalized, forcibly drugged, restrained, sedated, and stripped of their legal rights. Every day. Listen to them sometime. Psychiatric survivor testimonies are readily available. And no, they aren’t talking about practices of 50 years ago, but those of today.

No one’s social, political, or religious beliefs—no matter how nonsensical or reprehensible you may find them—merit this kind of treatment. Not in anything resembling a free society, anyway. Please stop using real people’s traumatic, abusive experiences as a reflexive insult with all the depth and thoughtfulness of “Your mama’s so fat.”

Sincerely,
Actual Real-Life Psychiatric Survivors

 

P.S. No, psychiatric freedom advocates do not bear responsibility for every violent crime committed by a psychiatric survivor which could have been prevented if only all non-neurotypical people were institutionalized like back in your good old days before Reagan. You do not get to strip the civil rights of an entire population simply because some tiny minority of them may commit crimes in the future.

And no, I have no interest in debating your hypothetical scenario of a person who is immediately near death if not subjected to forced medical treatment. The vast majority of forced medical treatment is not an immediate life-or-death issue, and bringing it up every time someone suggests that institutionalization is anything other than harmless is nothing but a red herring.

 

P.P.S You’ll note that I explicitly did NOT take anyone to task for “trivializing serious disorders,” as most people who dare challenge you on this issue do. That’s because many of the conditions and disabilities experienced by psychiatric survivors are NOT “serious disorders.” Some are. They are rare.

 

P.P.P.S. If you’ve been institutionalized and liked it or feel like it helped you, fine. Wonderful. Good for you. No one is trying to take away voluntary treatments, so please don’t even bring up that red herring.  Right now, I am talking about the people who have been abused and harmed by these treatments. If you were not harmed, good for you. Please consider yourself lucky, and stop standing in the way of rights for those whose experience was not as fortunate as yours.

Changing the Odds (Autistics Speaking Day)

Most of the terminology commonly associated with Autism Spectrum Conditions is undeniably degrading and dehumanizing: disorder, illness, regression, disease, suffering, impairment, low-functioning, broken, damaged, confined, relegated, trapped. However, terminology associated with a “positive” view of autism can, in its own way, be equally degrading and dehumanizing: special, high-functioning, progress, milestones, angels, speaks so well, beating the odds. These are offensive for the same reason the more blatantly negative terms are offensive—they reduce autistic people to one or two characteristics, deny them the full spectrum of human traits, define them primarily by the effect they have on the non-autistic people around them, define “progress” and “functioning” by degree of similarity to neurotypical norms, and presume incompetence through the soft bigotry of low expectations.

“Beating the odds” is particularly disturbing upon closer examination. It’s rooted in the premise that most autistic people are incapable of success at anything at all, so any achievement of any autistic person is rising far above the average autistic’s capabilities—even when, statistically, it makes no sense (most autistic people learn to speak at some point in their childhoods, so an autistic child’s gaining speech is perfectly in line with the odds). Perhaps more disturbingly, the “beating the odds” narrative presents all of the obstacles to autistic success as permanent unchangeable barriers. The odds are what they are; the individual’s duty is to beat them.

Of course, by definition, we can’t all beat the odds. That’s part of the narrative, too, the competition. There are a very few “successful autistic person” slots available, and one person’s success necessarily means another person’s failure. Nevertheless, we’re supposed to keep striving for those coveted slots. Working ever harder, sparing no effort, no expense. “Beating the odds” comes to be like outrunning the dragon, with all accompanying desperation, terror, obsession. We must beat the odds.

The “beating the odds” narrative is in contrast to another narrative, one of changing the odds. While a “beating the odds” narrative casts social conditions, including vast inequality of opportunity, as immutable, perhaps even as a decree of nature, a “changing the odds” narrative views social conditions as created by, and able to be changed by, humans. The number of “successful autistic person” slots can be expanded. Obstacles and barriers to success can be reduced or eliminated. Overall resources can be distributed more evenly, such that the success of one need not necessarily involve the failure of another.

The two narratives hint at underlying differences in philosophical worldviews, which have broad implications in education, business, child-rearing, medicine, and public policy. And there’s no doubt that “beating the odds” is the prevailing narrative. Adherents are very reluctant to part from this narrative, even when it falls apart on examination. As Jessica Hagy summarized the dominant view within education, “Everyone can join the top 1% if they do well enough in school and ignore the basic math problem inherent in that idea.”

In the context of disability, the “beating the odds” and “changing the odds” narratives broadly correspond to the medical and social models of disability. The medical model presumes that social norms of behavior, external expectations, and the policies of institutions (such as schools and workplaces) are an objective standard against which a disabled person can be measured. The only hope for a disabled person is to receive sufficient medical treatment as to overcome his disability and become normal, thus beating the odds. The odds are constant; the individual is variable. The social model recognizes that institutions, attitudes, and social norms are also variable. The individual does not necessarily have to change himself to beat the odds; the odds themselves can be changed.

Why does the “beating the odds” narrative resonate so much more strongly than the alternative? Perhaps because it appeals to the competitive spirit, or perhaps because it sounds more realistic and attainable. Changing an individual seems easier than changing an institution. Perhaps people favor the supposed objectivity of standards which favor themselves. But those who are placed at a disadvantage by those standards surely have a right to question them, particularly when they violate basic math or basic logic. The essence of autism acceptance is not the sponsorship of treatments to help individual autistic people beat the odds; it is to change the odds for all autistic people. Autistics Speaking Day should be an exercise in changing the odds. Autistic voices should be the default, not the exception, in discussions of autism. For the benefit of all involved, it is well past time to advocate a change in odds of the following circumstances:

An autistic student receiving the same quality of academic instruction as his or her neurotypical peers;
An autistic person becoming his or her own guardian upon reaching the age of majority;
A nonspeaking autistic person successfully communicating with others through writing, sign language, or other means of augmented communication;
An autistic adult choosing whether, when, and with whom to undertake a romantic relationship or life partnership, and deciding the terms of such an arrangement;
An autistic job applicant being evaluated on his or her ability to perform the tasks required, on an equal basis with neurotypical applicants;
A spokesperson purporting to speak for the interests of autistic people being an actual autistic person;
A panel or committee purporting to address autistic issues having an autistic majority;
An autistic person exercising freedom of movement;
An autistic person exercising freedom of association;
An autistic person living where he or she chooses;
An autistic person being happy with his or her life;
An autistic person pursuing a career or vocation of his or her choosing;
An autistic person being included as a fully-participating equal in a social setting;
An autistic person speaking for him or herself.

The goal of the autistic self-advocacy movement should be to change the odds of all of these occurrences to be as close as possible to one.